Neuropathy: My Journey

Posted by artemis1886 @artemis1886, Nov 5, 2023

I have a question. Have any of you with small fiber neuropathy along with severe axonal sensorimotor polyneuropathy have these problems after being diagnosed?
2015 diagnosed with the polyneuropathies
2020 diagnosed with hypothyroidism (can cause neuropathy but
I was diagnosed with neuropathy first) thyroid was fine
Cysts and tumor on thyroid
2023 doing testing for diabetes first time glucose levels elevated
found cysts on pancreas A1C level 5.7 glucose 103
Yes that was fasting.
Has anyone had these problems after being diagnosed with neuropathy?
They do not know the etiology (cause) of mine!
University of Boston research neurology is starting testing on me for genetics

Interested in more discussions like this? Go to the Neuropathy Support Group.

@artemis1886

Just how many different types of neuropathy can one person have?
CAN- cardiac autonomic neuropathy
Severe axonal sensorimotor peripheral
polyneuropathy
Small fiber Neuropathy
Dysautonomia Neuropathy
What’s next?

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Hey Friends,
I have been getting the Cyclone laser treatments on my feet. I wanted to let you know that it really feels good for one thing. I would say that the feeling in my feet has gotten about 50% better. That is probably the best it will get in my opinion. I am now in the phase of maintaining the improvement. So, for me this is well worth the out-of-pocket cost. Insurance will not cover any of it. You must find a highly credible chiropractor. I mean one that truly cares enough to invest in the proper equipment and time and expense of training. I am told that the machine is in the $50,000 range. I also had shock wave treatment on one foot for Fasciitis that is totally gone. Amazing!
I am here to tell you that my experience is that you have got to find the right Chiropractic center! I have been to many in my life none come close to this one. He now has people coming from hours away and is extending hours to accommodate first taking care of prior patients and then new patients. The staff is outstanding and truly want to see you improve. That is very important. They go far beyond what they "have to do". People I want you to also know that my feet are uncomfortable after being on them a few hours, but I can feel that, and that is welcomed. I am no longer digging my toes into the shower floor, things like that. Not a cure but sure is better than the road I was heading done. Now I also had them treat my neck and hands with laser and that what not as helpful. But, that is ok. My feet did improve. Just Rember that one, the treatment has to be performed with this special equipment and two the rest is the office and staff. That is my take away.

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@briarbluff

Hey Friends,
I have been getting the Cyclone laser treatments on my feet. I wanted to let you know that it really feels good for one thing. I would say that the feeling in my feet has gotten about 50% better. That is probably the best it will get in my opinion. I am now in the phase of maintaining the improvement. So, for me this is well worth the out-of-pocket cost. Insurance will not cover any of it. You must find a highly credible chiropractor. I mean one that truly cares enough to invest in the proper equipment and time and expense of training. I am told that the machine is in the $50,000 range. I also had shock wave treatment on one foot for Fasciitis that is totally gone. Amazing!
I am here to tell you that my experience is that you have got to find the right Chiropractic center! I have been to many in my life none come close to this one. He now has people coming from hours away and is extending hours to accommodate first taking care of prior patients and then new patients. The staff is outstanding and truly want to see you improve. That is very important. They go far beyond what they "have to do". People I want you to also know that my feet are uncomfortable after being on them a few hours, but I can feel that, and that is welcomed. I am no longer digging my toes into the shower floor, things like that. Not a cure but sure is better than the road I was heading done. Now I also had them treat my neck and hands with laser and that what not as helpful. But, that is ok. My feet did improve. Just Rember that one, the treatment has to be performed with this special equipment and two the rest is the office and staff. That is my take away.

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What is the cause of your neuropathy? Do you still have numbness? Prickly zaps?
Happy it's worked for you.

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Well now my A1C is 5.4
Glucose 88
My body can’t make up its mind
Mine is autoimmune my Ana, crp, ear, and level c all elevated but can’t figure out what’s causing it

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I am hoping a Doctor, another medical professional practitioner, or an informed reader of this Mayo Clinic website can answer this question. Q: Is there any 'medical test' that can determine if the antibiotic drug, (Levofloxacin), prescribed for on onset of chronic Bronchitis, caused a substantial and very quick increase in pain (due to existing non-diabetic peripheral neuropathy, degenerative disk disease, and spinal stenosis? The new pain was immediate, within two days of taking the antibiotic, in my lower back, and down the back of both legs. It forced me to use a 'walker' until an MRI for further assessment can be conducted. Thank you.

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@surayabay24

I am hoping a Doctor, another medical professional practitioner, or an informed reader of this Mayo Clinic website can answer this question. Q: Is there any 'medical test' that can determine if the antibiotic drug, (Levofloxacin), prescribed for on onset of chronic Bronchitis, caused a substantial and very quick increase in pain (due to existing non-diabetic peripheral neuropathy, degenerative disk disease, and spinal stenosis? The new pain was immediate, within two days of taking the antibiotic, in my lower back, and down the back of both legs. It forced me to use a 'walker' until an MRI for further assessment can be conducted. Thank you.

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If you look on the list of medications that causes neuropathy I believe that’s one of them. The Foundation of Peripheral neuropathy look user causes. Look at RX med induced neuropathy

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If you go to a neurologist you need to look for a neuromuscular neurologist. They specialize in neuropathy. Normally not always if it is medication induced it takes about three to six months to wear off some or totally. Everyone is different.

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Thank you for your comments. I'm still not sure how a Doctor determines that the drug (Levofloxacin), was the cause of the report from the patient. Is the 'known fact' that this drug causes the issues reported, enough? Will the cause be obvious from the MRI results? ( I've had Neuropathy since shortly after a spinal fusion, about twenty years ago). Is there any medical test, blood, x-ray, CAT scan, etc., to ensure a proper diagnosis that this drug caused the issue, if case other drugs are prescribed for pain management until the effects of the Levofloxacin wear off? Did the PA, and Doctor who prescribed this medication just err in judgment, or believe the benefits of the medication outweigh the risk to the patient?

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Read the insert very carefully under side effects. It ruptured my planter fashitis tendon and I had to have surgery. I can’t take any of the floxin drugs after that. It’s listed as a known side effects but they make it sound rare. What triggered my neuropathy to get worse and trigger my heart problems was the second moderna shot. It caused cardiac autonomic neuropathy. They did not tell people it could make their neuropathy worse. You have to be careful what you take with neuropathy. There’s no test that can be done. Depending on how long ago your EMG/nerve conduction test was you could have another one done. It would have to be close together the test. I do not know what your neuropathy score was. Mine was 9.5 severe and 10 is the highest. My neurologist told me we would never have to repeat it since my score was so high. I know by experience certain things make it worse. For example if I have something sweet like cake or brownies I pay for it that night. Yet I can eat an orange or apple and I don’t have as bad problems.
How long has it been since you took the last pill? Did you stop the prescription and take something else or did you keep taking it once the problem got worse?

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@surayabay24

Thank you for your comments. I'm still not sure how a Doctor determines that the drug (Levofloxacin), was the cause of the report from the patient. Is the 'known fact' that this drug causes the issues reported, enough? Will the cause be obvious from the MRI results? ( I've had Neuropathy since shortly after a spinal fusion, about twenty years ago). Is there any medical test, blood, x-ray, CAT scan, etc., to ensure a proper diagnosis that this drug caused the issue, if case other drugs are prescribed for pain management until the effects of the Levofloxacin wear off? Did the PA, and Doctor who prescribed this medication just err in judgment, or believe the benefits of the medication outweigh the risk to the patient?

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@artemis1886

Read the insert very carefully under side effects. It ruptured my planter fashitis tendon and I had to have surgery. I can’t take any of the floxin drugs after that. It’s listed as a known side effects but they make it sound rare. What triggered my neuropathy to get worse and trigger my heart problems was the second moderna shot. It caused cardiac autonomic neuropathy. They did not tell people it could make their neuropathy worse. You have to be careful what you take with neuropathy. There’s no test that can be done. Depending on how long ago your EMG/nerve conduction test was you could have another one done. It would have to be close together the test. I do not know what your neuropathy score was. Mine was 9.5 severe and 10 is the highest. My neurologist told me we would never have to repeat it since my score was so high. I know by experience certain things make it worse. For example if I have something sweet like cake or brownies I pay for it that night. Yet I can eat an orange or apple and I don’t have as bad problems.
How long has it been since you took the last pill? Did you stop the prescription and take something else or did you keep taking it once the problem got worse?

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Hi @artemis1886 ,

The type of sugar truly changes the reaction and length of recovery. Still paying for Sunday, and I know better!

JFN

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